In reality, i know it was a good reminder, and is allowing us to ensure I’m kept as safe as I possibly can be. It’s all part of moving life forwards and living with my condition. That can only be good, but sometimes I get a bit chicken about it all. Which is silly, really. Far better to be aware and have plans in place.
The facts are very simple. I am living with a brain tumour. I’m very far from being the only one....... in fact in the past week, I have spoken to family members of three others in a similar position. One was given 3 years to live...... 7 years ago. One has been successfully working through things for the past 3 years. Another lives with weekly seizures but keeps otherwise very well. Today I met a young boy who’s living with bone cancer. He underwent 10 chemotherapy cycles and is braver and more inspirational than I could ever even pretend to come close to being. A true champ.
There are so many people....... so many heroes. We don’t realise. One in two people are now believed to be diagnosed with cancer in Northern Ireland. Half of us.
Being a stat still sucks, but I know I’m fortunate and I am hugely grateful for many things. We are living with....... all doing well....... all alive and living a life. My reality is a good one...... I am in a monitoring schedule. My scan results have been good to date. The next one should be around May time. If results remain unchanged then I’ll live the same life as many other cancer patients...... scan, hopefully good results, longer wait for next scan........
In 15 months I’ve had less than 5 seizures. The initial ‘big one’, a grand mal, has never been repeated and is very unlikely to be due to surgery removing so much of the tumour. I’ve had 4 or 5 smaller seizures. These have been directly linked to medication changes, with the exception of Sunday when a temperature spike due to a sinus infection was the cause. I can understand that having a potentially epileptic friend/family member/work colleague is a big responsibility to put onto people. To provide some genuine reassurance to others, and to try and ensure I’m kept safe and also not putting undue pressure on others, I am gathering together information for you guys. It’ll mean everyone knows what to do should anything happen. I say this with the massive caveats that a seizure is very unlikely to happen, if it did it’d only last a couple of minutes, I’ll know it’s coming and will pre-warn you, and it won’t do me any harm so long as I’m somewhere safe (which I’ll make sure I am). I promise I am taking personal responsibility but I’m also very sympathetic and apologetic for any worry it causes to anyone around me.
I know that the risk of me having a seizure impacts on others..... friends, family, work colleagues...... putting things in context, I don’t regularly have them, I’m on medication that works, and there is absolutely no reason why this won’t continue to be the case moving forwards. However, I am gathering together information for anyone who might spend time alone with me. For everyone’s reassurance. I’ve already got lots of things in place and plenty more ideas....... there are great things you can do with your iPhone in terms of medical IDs and alarms etc. Epilepsy Action have some amazing resources, and I have other stuff planned too. I’m hoping that I may be able to pave the way a bit for others and I’m grateful to others for ‘learning’ with me. This is particularly true of work colleagues. The fact is that I’m potentially a bit of a risk to them..... and they’ve been wonderful at working with me to mitigate any risk. They could’ve just told me they couldn’t accommodate me and I’d have been forced to medical off. Which isn’t what I want. Instead, we are all working together to ensure I’m safe, they’re covered, and no-one is put into an unfair position. We’re taking our time and doing it right.
As a result, I took yesterday and today off work completely. I’m back in on Monday to sort a few details out. It’s a bit frustrating, but it’s necessary and will be worth it. I made the most of the few days......... with plenty of family time. Yesterday I spent a wonderful few hours with a childhood friend and her parents. We reminisced about times spent as 7 year olds....... right through to our teenage years. It was heart warming and fun, and I thoroughly enjoyed it. Today was spent with my dear, old dad. We enjoyed a beautiful spring day, with a promenade walk, coastal drive, lunch out and a trip into town. And to finish my day off perfectly, my in laws arrived for a cuppa not long after I got home this afternoon. I now find myself exhausted, but content and looking forward to a deep sleep tonight!
Life remains good. Challenges remain achievable with the ongoing support of family and friends. Each passing day, and each new challenge conquered reminds me of how fortunate I am. Hopefully my experience is/will make things easier for others. All learning together. Living with....... xx
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